MRKH Monday! #MRKHmonday

See what MRKH meetings and meet-up opportunities are happening near you!

MRKH Day Update! Please make your calendars to attend MRKH Day on April 11, 2015 at  University of Michigan! This meeting is typically in May but has been moved up this year to April. BYMRKH is proud to co-host this awesome conference and we hope to see many of you there! We will share more information about this meeting as the time gets closer.

MRKH Connect is hosting their annual Queen Charlotte’s and Chelsea Support Group in London on November 15, 2015 and they want to invite you to attend. They are offering a sponsorship to help one or more women attend this meeting, by helping to defray the costs of travel and/or accommodation. If you would like to apply for the sponsorship, please download the form from their website and follow the instructions. Send your form to info@mrkh by October 12, 2015. The recipients of the sponsorship will be announced on October 18, 2015. Click on this link to download the form. http://www.mrkhconnect.org/index.php?option=com_content&view=article&id=9&Itemid=160 For more information, please go to their website at http://www.mrkhconnect.org

Mid Atlantic MRKH invites you to join them in Poughkeepsie for a support group and social gathering for women with MRKH. The support group will be hosted from 1-3 pm by fellow MRKHer and LCSW, Susan Rudnick in a private space at Buttermilk Falls Inn and Spa. After an hour break, women with MRKH will meet again at 4pm at Millhouse Brewery for some drinks and snacks. The support groups session is for women with MRKH only, but the social gathering is open to family and significant others. The attendance fee is $5.00 and can be paid at our website at http://www.mid-atlanticmrkh.org under “pay your attendance fee here.” For any questions regarding the event, please contact Laura and Meredith at midatlanticmrkh@gmail.com .

 

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My Hopeful Journey to Motherhood

Hello fellow MRKH Warriors! My name is Chrissy, I live in Maryland with my amazing husband of 7 years and we are just starting our journey to parenthood by way of Gestational Surrogacy, I wanted to share my journey so far with you.

After a devastating exploratory surgery when I was 14, that left me in a week long coma, and 30 days in ICU, I found out that I would never be able to carry my own children. The doctors did reassure me that adoption and gestational surrogacy were options, but they never talked about how difficult and expensive those options would be. What’s ironic is when teachers or family would ask me what I wanted to be when I grew up, it was the typical Teacher, or Doctor type Reponses. Mine was always a resounding “I want to be a Mom” which always got a smile and a “you will be” response.

Chrissy 1

When I married my soul mate at 21, we planned to wait maybe 3 years before looking into surrogacy, we had time, we thought… My older sister had always generously offered to be our carrier, but we didn’t know the first thing about the process. I regret not starting the research back then, I just assumed it would be an easy process…

In 2011, we had been married for 4 years, we were in a stable place in life, we had bought a house, we both had great careers – we were ready! So I made an appointment with a local very well known Reproductive Endocrinologist (IVF doctor). He ran a battery of tests and scans and gave us a brief overview of the IVF and Gestational Carrier process. I don’t remember most of the meeting, but the news wasn’t great. Even at my age, my ovarian reserve was low- likely due to my various gynecological surgeries, including significant blood loss and exposure to all of the scans throughout my life, and more shocking the process would probably cost us $100,000… Our health insurance didn’t cover any fertility treatments. We left his office feeling defeated and shattered.

After a few sad weeks I felt a new type of energy take over me, and a stronger resolve to achieve my dream of becoming a mother. I bought books, looked online for grants, and started researching the process. In late 2012 we finally had a good chunk of the money saved up to at least get started…then my sister got engaged and married….and wanted to grow her own family first. Don’t get me wrong, I love my sister and was excited to get a new niece or nephew but how long we would have to wait before it “our turn.” Lee and I decided in the fall of 2013 we weren’t going to wait, yes it would cost more to “hire” a surrogate, but we knew we could make it happen and gosh darn it we were done waiting!!!

We applied for grants, posted ads on all of the available online surrogate matching sites, and even posted a plea on our Facebook pages hoping any of our friends or family would be willing or knew someone willing to carry for us.

Chrissy 2

Amazingly we were awarded a $5,000 Family Building Grant from the Cade Foundation, a local organization that provides grants for fertility treatments and/or adoption, for 2014! We were so excited, we went back to the RE to get the show on the road…but the doctor had changed his tune, he claimed the board thought my case was too risky and we shouldn’t move forward with an egg retrieval, he pushed the idea of donor eggs, but we weren’t ready to give up. I made an appointment with Dr. Lisa Kolp at John Hopkins, an MRKH specialist and surgeon that removed my painful uterine remnants in 2009. I wanted to get her opinion on my situation since she had actually seen inside of me before. When I asked her if she knew of any doctors that might be willing to do IVF with me, she responded “I do IVF!” I was shocked!! And even more, she was very willing to do the retrieval and saw no more risk than any other patient.

Even though we didn’t have a carrier lined it we thought it would be best to move forweard with the egg retrieval, for one thing I wasn’t getting any younger and secondly the grant had to be used during 2014.

Chrissy 3 On Tuesday May 27th 2014, we “officially” started our fertility treatments! Dr. Kolp wanted me to take a round of Clomid (a cheap ovary stimulating pill) to see how my ovaries would react, and to see if once they are “plump” she could locate them a little easier to plan for the method of retrieval. Since MRKHers don’t have a uterus to hold them in place sometime they tend to float up and back making the normal – vaginal- retrieval method impossible. After our initial consult she was pleased to find out that I have been tracking my Basal Body Temperature (BBT) since January so I knew exactly where I was in my cycle, this would help speed up the process instead of having to do blood work every day to figure it out. I was eager to finally DO something, but when it came time to take the pills on the first night, I nearly broke down. The always suppressed, but just waiting to pop out, nagging “Why me??” came back with a vengeance, but I put on my big girl pants and tried to make light of it by asking Lee to snap a picture of me taking them. Thankfully I had no bad side effects from the medicine, I heard the headaches and mood swings can be tortuous.

I attended the mandatory IVF Class, taught by the amazing IVF nurses at John Hopkins. I was the first to walk in the training room that morning and in front of each chair was a thick packet of papers, and various needles, vials and other not so fun looking items. I was instantly gulping for air. But I had known this came with the IVF territory, and it would be worth it. So once again, I put my big girl pants on and took feverish notes during the 2 hour class soaking in as much knowledge as I could.

After the class I met with Dr. Kolp privately to discuss her specific plan for us, since like always we aren’t the “norm.” I brought up a few things from the class I had questions on. This is where being your own patient advocate comes into play people!! I wrote down something the nurse said during the class “If your FSH is above 10 on Cycle Day 2, it might delay your treatment,” so I asked our RE about it…she said “hmm that’s a good question, since yours is already higher than that we’ll go ahead have you take medicine to lower it to avoid that.” See if I didn’t say something, we may have had a snafu resulting in lost time and money. Glad I’m a planner, did my research, knew my own stats and wasn’t afraid to speak up!

I decided to get acupuncture throughout the IVF process (and actually decided to continue it afterwards, it has amazing affects for me!). There have been countless studies showing that acupuncture can help egg production, increase blood flow, and raise pregnancy success rates, with or without IVF treatments. Online message boards are rife with tips and old wive’s tales claiming to help your fertility. Things like eating pinnacle core and brazil nuts and all sorts of things. One of those being a specific diet of foods—there are varying opinions on which is the best. I did choose the paleo diet to follow (only eating white meat, fruit, veggies nuts & beans …no dairy, gluten, alcohol, caffeine, preservatives, etc.) which I subjected myself to since for 3 months, In addition to losing nearly 10lbs I felt soooo much healthier, that has to be good for my eggs right? Lee was amazing making sure I have healthy snacks, and left overs for lunch each day. I couldn’t do this without him. It was nice to be “in control” on something in a process where you virtually have no control.

Since our insurance doesn’t cover fertility treatments we were constantly trying to find ways to save money throughout our journey – without cutting corners of course! We took out a 401K loan, maxed our HSA account contributions and opened a high interest yielding savings account to store our ‘baby funds.’ Another way we saved was buying the fertility medicine overseas, we saved about 50%!! Our biggest way to save yet was to submit all of the claims to insurance even though we “knew” they would get denied…well guess what!! They ended up covering about 60% of the $9,500 JHU quoted us for the retrieval. They seemed to cover all of the blood work, ultrasounds and anesthesiologist fee for the retrieval procedure, so really all of the non-IVF specific things they covered! We were shocked! I also compiled a list of other ways to save money here to help others out.

I started the required injections of medication on June 15th 2014. After a hilarious first injection (pretty much anything that could have gone wrong went wrong, but we laughed through it all) the rest were smooth sailing and really didn’t hurt as much as I thought.

Throughout the weeks that followed I had to do the very time sensitive injections in various places including the in-laws house, a bathroom stall at Nationals Baseball Stadium and a hotel in Philadelphia! I continued with them daily for 17 days (a total of 21 injections). I also drove over an hour to John Hopkins early in the morning every few days for blood work and ultrasounds to track my progress. The only real side effects I was having was extreme exhaustion and headaches. I even slept for 15 hours one night!!! So that’s great, most women complain of various horrible side effects.

Chrissy 4

On July 3rd 2014 we went to the surgery center for the Egg Retrieval. I wore my Lucky socks and tried to stay as relaxed as possible. They administered the anesthesia and I giggled as I fell asleep. The procedure itself was quick, only about 15 minutes!!! Dr. Kolp was able to retrieve 5 eggs, Lee did his part ;-) and we left before rush hour traffic set in! I was very sore for several days afterwards and tried to take it easy over the long holiday weekend. They were able to retrieve the eggs vaginally and here is a video showing the procedure if you’re interested (FYI it’s not me in the video!!)

To be honest, getting only 5 eggs isn’t that great for my age (28 years old at the time). Most women my age get at least 10, sometimes even 20!! But the doctor was confident that QUALITY over QUANTITY is the way to go, and that with my age, (and all the supplements and old wives tales I followed) all my eggs retrieved should be great quality egg.

The embryologist called us each day to let me know the progress and we were amazed that ALL 5 eggs fertilized easily and continued to grow for 5 days!! It was very nerve wrecking each morning, waiting for the call to see how they were doing especially when they were late calling 2 of the days. And having to wait the 5 days until they were safely frozen them was a test of our patience! Then we got the call that ALL 5 made it to the blastocyst stage and are now safely frozen away for our use later…aka our Frosties!!! Dr. Kolp even called me “Secretly Fertile” since all were great quality. It’s actually quite rare to have all eggs retrieved become fertilized and survive the 5 days, so yay us!

So now we are hoping that we find a carrier soon to “babysit” one of our embryos for 9 months!!

I would like to note that besides the initial timing of the IVF treatment/medication (due to not having a period to time it) and the method of retrieval due to location of your ovaries, IVF egg retrieval is no different for MRKH patients and non-MRKH patients. Mine was thought to be trickier due to abnormal scaring and vasculature from my previous surgeries, but I think that particular doctor was being overly cautious and was looking out more for his clinic’s success rates/statistics than my own experience and well being.

I have a website and blog www.ChrissyandLee.com and please feel free to message me through there with any questions!

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Happy MRKH Moday! #MRKHmonday

Here’s a recap of what has been going on in the last week:

This week in upcoming meetings:

Save the date- Saturday 1st November 2014 for the Sisters for Love Foundation November meeting. Click on this link to learn more about the meeting: http://www.sistersforlove.org/events-and-news.html

This week in print:

Ally Hensley writes a powerful post that I encourage all of you to read. Click here to read “Since When is the ‘V’ Word so Easy to Say?”

http://www.elephantjournal.com/2014/09/since-when-is-the-v-word-so-easy-to-say-ally-hensley/

This week in Dear My Sister: 

A new Dear My Sister letter is up and ready to be seen. Please read this letter by our MRKH sister, Kristen Peterson here:

http://www.sistersforlove.org/letter-box.html

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An MRKH Warrior Discusses Beauty

beautifulyoumrkh:

Co-founder of BYMRKH Shares What Beauty is to Her

Originally posted on travelingeneticist:

Over the past few months, I have been reflecting on the deep-seated reasons for my career change from an academic scientist at a top tier research university to my new venture in science policy in DC. I realized that founding the Beautiful You MRKH Foundation, Inc., with Christina Ruth and becoming a patient advocate for women born with MRKH, a congenital syndrome leading to primary infertility, played a major role in my decision (see my previous blog post on infertility and MRKH). The name of our non-profit agency underscores the importance of recognizing beauty in oneself, yet hints that society’s definition of beauty often rests on the outward physical manifestations of one’s individual genetic roll of the dice. Many women who are born differently (those of us with MRKH and other conditions that challenge our value as women) often have a negative body image, suffer from poor self-esteem…

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MRKH Monday #MRKHmonday

Your weekly update of what is going on within the MRKH community:

We thank everyone who purchased a fabulous item (or items) from the Stella & Dot sale that benefitted BYMRKH! A special Thank YOU to Deb Donovan who donated her profits to help women with MRKH! This especially touches our heart because Stella and Dot is the side business she started to help her raise the funds to pursue her dream of becoming a mother. It humbles us that she chose to use this venue to help those who share her diagnosis. Together we raised over $675.00! Thank you!

Jaclyn talks about MRKH on Survivor! Read her bio by clicking the link below. http://www.cbs.com/shows/survivor/cast/214923/

Watch a past interview with the Director of Warrior Rokitansky in Mexico here: https://www.youtube.com/watch?v=FnU0m91KdsY

The first chapter of Rokitansky is available for you to read! Click on this link to read the first chapter here: http://mrkhnorge.no/2014/09/02/rokitansky-1th-chapter/

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Your weekly re-cap of what is going on within the MRKH community #MRKHmonday

The Beautiful You MRKH Foundation planned Meetings around the US for the next year:

October 25–Boston Children’s Meeting (age restrictions)http://youngwomenshealth.org/mrkh-conference/

October 26–Boston Get Together (All ages) at Simmons College, co-hosted with The MRKH Organization, Inc.

May 2015 (date not set)–MRKH Day in Ann Arbor, MI

June 6, 2015–MRKH Meeting at Texas Children’s Hospital, Houston, TX

August 1, 2015–MRKH Meeting in Seattle, WA

October 2015–Boston Children’s Meeting

2016 Meetings: Ann Arbor, Atlanta, West Coast (LA or SF area) Houston, Boston

The West Coast Meeting will alternate between the Pac Northwest, Northern CA area and So California

This week in blogs:

This blog talks about the adoption journey. Please read one of our MRKH sisters first blog post here: http://whimsicalbee.com/hope-box/

Kristen Peterson talks about self acceptance and finding herself in her blog post titled, “The caterpillar and the butterfly.” Please read the post here: http://www.mrkhuh.blogspot.com/2014/08/the-caterpillar-and-butterfly.html

This week on Facebook:

Do you speak Spanish? If so, I encourage you to join MRKH Soporte Conciencia Experiencia. This group has women from Chile, Mexico, Colombia, Peru, Costa Rica, Spain, Panama, etc., Please click on the link below to join the group:

https://www.facebook.com/groups/334976756660553/

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Happy MRKH Monday everyone! Here is your weekly update. #MRKHmonday

1) The Stella and Dot Trunk Show was so much fun! As of this evening, we have raised $284 for the Beautiful You MRKH Foundation. The online Trunk Show will remain active until September 5th, so if you missed the event in person, you can still order through the website (click below). http://www.stelladot.com/ts/i9tx5

It was great to finally meet Deb Donovan in person. She showed us how to braid a scarf and how to turn one into a vest. She also demonstrated how most of the jewelry can be worn in multiple ways. It was great meeting her family and seeing the love they have for her.

The highlight of the afternoon came from the most unexpected place. One of the attendees, who was there to support her friend with MRKH, gave me two $1 bills as a donation. Here is her story: As she was getting ready to leave for the party, she told her sons where she was going. They said, “Wait!” and ran into their rooms. They each came back with $1 from their piggy banks. The kindness and caring behind those two dollar bills will stay with me as a reminder of how many lives each of us touch, and how the smallest gifts given with love mean so much to those who receive them. XOXO Amy

2) We want to highlight some great recent blog posts by some of our MRKH sisters.

Chrissy writes a great post stating how MRKH hasn’t stopped her and others women from becoming mothers. Chrissy also invites you to join her private group, Mothers with MRKH. Please read the post here: http://chrissyandlee.weebly.com/follow-our-journey/mothers-with-mrkh

One of our MRKH sisters recently ‘came out’ with having MRKH in her blog. Please read Janay Cooks’ powerful post, “Finding Purpose in your pain” by clicking on this link: http://naturaljournalist.wix.com/natural#!Finding-purpose-in-your-pain/cmbz/6896A6DF-4405-4D47-BACE-F977AFAF80B7

3) Do you have MRKH and you don’t feel comfortable being in an open group? There is this great private group for younger women with MRKH called the Fighters! The group was started by a young woman who wanted to keep contact with her sisters that she met at the Boston Children’s conference. If you are interested in joining, please private message me (Christina MRKH) and I will you introduce you to the administrator of this page through private message.

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